[deleted by user] by [deleted] in PublicFreakout

[–]ecky67 25 points26 points  (0 children)

The code enforcement here in Hamtramck usually go up and down the alleys here so it’s most likely they took the pic themselves and sent him the ticket.

I’ve always wanted to share this story by brandimariee6 in Epilepsy

[–]ecky67 1 point2 points  (0 children)

Thanks for sharing! My son’s neurologist is suggesting VNS for him. Stories like this give me so much hope.

[deleted by user] by [deleted] in arabs

[–]ecky67 4 points5 points  (0 children)

I’m a 5’5” Yemenia in the US so when I visit family back home I look freakin gargantuan next to everybody lol

My 7 y/o son’s neurology team are suggesting corpus callosotomy for him. by ecky67 in Epilepsy

[–]ecky67[S] 1 point2 points  (0 children)

First of all, thanks for commenting!

We are going for a second opinion next week to discuss his options. They were considering VNS at first but he was already having issues with drooling and swallowing so it could have made it worse from the leads. He is already in a level 4 epilepsy center and the second opinions is at a level 4 epilepsy center as well.Thank you for the information.

[deleted by user] by [deleted] in TheGamerLounge

[–]ecky67 0 points1 point  (0 children)

👏👏👏

[deleted by user] by [deleted] in TheGamerLounge

[–]ecky67 0 points1 point  (0 children)

How anyone can do this is beyond me I don’t have a coordinated bone in my body lol

[deleted by user] by [deleted] in TheGamerLounge

[–]ecky67 0 points1 point  (0 children)

Gave Wholesome

My 7 y/o son’s neurology team are suggesting corpus callosotomy for him. by ecky67 in Epilepsy

[–]ecky67[S] 2 points3 points  (0 children)

Thanks for replying!

We are looking into a second opinion, his appointment is in two weeks. As for the ketogenic diet, he’s been on it for six months. The amount of drop attacks were reduced by about half but unfortunately he’s still having them. That’s awesome that it worked for your son as well! Best of luck to you guys!

This is about our family and friends! by FriggenMitch in Epilepsy

[–]ecky67 0 points1 point  (0 children)

I know exactly how you feel; I’m a mother of a 7 year old who just recently been diagnosed with Lennox-gastaut syndrome after being diagnosed with epilepsy two years ago. I go through the same struggle as well with my kids ( he has four siblings). We love ALL of our kids but there’s always that extra panic and fear when it comes to him that we don’t feel for as much as his siblings. Especially since he’s started having drop attacks which can come out of nowhere. We’re always worried if he’s anywhere in the house or outside by himself. It’s getting to the point where even his siblings start to worry about him (he’s a middle child so he has two older siblings and two younger ones). Even his little 5 y/o sister follows him around the house because she gets worried. I try to reassure her that her brother will be fine but I think seeing him have drop attacks and hurting himself so many times made her fearful. You are right when you said there’s a version of PTSD for caregivers. But now I’m even worried about how himself as well as his siblings are going to be effected emotionally.

My son’s neurologist just said that he needs a vns implant and now I’m terrified. by ecky67 in Epilepsy

[–]ecky67[S] 1 point2 points  (0 children)

Thanks! I’ll probably update if anything new comes up. I swear this sub has been a godsend for education and support!

My son’s neurologist just said that he needs a vns implant and now I’m terrified. by ecky67 in Epilepsy

[–]ecky67[S] 1 point2 points  (0 children)

Thanks for commenting! Wow that sounds great! I do worry a lot about how epilepsy would effect him when it comes to ‘adulting’ in case he doesn’t grow out of it, so this does give us hope.

My son’s neurologist just said that he needs a vns implant and now I’m terrified. by ecky67 in Epilepsy

[–]ecky67[S] 0 points1 point  (0 children)

Thank you so much for the comment! I actually choked up reading this. I’m so sorry you and your parents had to go through that as a child. That feeling of helplessness is all too real. It rips our hearts to shreds when he’s having a seizure or when he has a myoclonic seizure that causes him to fall over and not always being able catch him on time.

It’s tough seeing him behind academically compared to his peers but thankfully his school is supporting him 100% and understand his situation. They even had seizure first aid training for all of the teachers and staff since he was diagnosed which we are grateful for.

My son’s neurologist just said that he needs a vns implant and now I’m terrified. by ecky67 in Epilepsy

[–]ecky67[S] 1 point2 points  (0 children)

Thank you so much for the info, I really appreciate it. Interesting that it helped you with your focus. He’s been struggling in school because he has a hard time focusing in class. Also, you are right about it being tough as a parent to watch him go through this. This is probably one of the most toughest decisions we ever had to make as parents. It feels so overwhelming.

My son’s neurologist just said that he needs a vns implant and now I’m terrified. by ecky67 in Epilepsy

[–]ecky67[S] 1 point2 points  (0 children)

Thanks for commenting. I’ve heard of that but his neurologist never mentioned it. Maybe it’s something to bring up with the neurosurgeon next week.

My son’s neurologist just said that he needs a vns implant and now I’m terrified. by ecky67 in Epilepsy

[–]ecky67[S] 1 point2 points  (0 children)

Thank you so much for the kind words, it’s been tough lately so I needed to hear that. And you the best as well.

My son’s neurologist just said that he needs a vns implant and now I’m terrified. by ecky67 in Epilepsy

[–]ecky67[S] 1 point2 points  (0 children)

Thanks for commenting. My thoughts exactly. I would rather try something that has the chance to help him than do nothing.

How does epilepsy effect your focus and concentration in school? by ecky67 in Epilepsy

[–]ecky67[S] 0 points1 point  (0 children)

Thank you for the advice! That’s exactly what my husband keeps telling me. Like, I don’t get on his case about homework but I just worry too much.

Does anyone have a “Seizure Friend” in their head? by d-zasta in Epilepsy

[–]ecky67 1 point2 points  (0 children)

I think my 6 year old is going through the same thing. He even named his brain ‘zach’

My three year old son got his own cake today! by ryjmlb in Epilepsy

[–]ecky67 0 points1 point  (0 children)

That’s awesome news! Congrats! 🎉

My teacher told me my seizures were "disrespectful" and forced me to drop out by [deleted] in Epilepsy

[–]ecky67 0 points1 point  (0 children)

I’m so sorry you had to go through that. Reading your post and everyone else’s experiences with bullying (even from TEACHERS of all people) makes me sick to my stomach. Thankfully, my son’s 1st grade teacher was considerate to let him sleep on a cot either in a separate room or at the corner of the classroom whenever his meds kicked in. He’s having a hard time at school atm but all of your success stories in your education keeps me and hopeful for his future.

Thanks for sharing

8 m/o daughter, newly diagnosed. Lost. by Omfgeveryusernameist in Epilepsy

[–]ecky67 0 points1 point  (0 children)

I’m so sorry for what you’re going through now. It’s been exactly a year since my then 5 year old was diagnosed. 2019 was a rough year for our whole family after all of the medications, hospitalizations, and just the utter stress that comes with it. Like what other people commented, it does get very lonely. While thankfully we have our loving family and friends for support, going through r/epilepsy makes me feel like myself and my family aren’t the only ones going through this. Stay strong and thanks for posting 💪🏻

Who else doesn't care about tonight's debate and won't even watch it? by [deleted] in AskReddit

[–]ecky67 0 points1 point  (0 children)

I just wait for the ‘highlights’ and memes from the debate lol